"Like Paul Revere with e-mail, Terry Singeltary Sr. is on a mission to sound an alarm: Beware of mad cow disease. As is true of many crusaders, however, his pleas often fall on deaf ears. But since his mother's death in December 1997, the Galveston County man has been obsessed with possible connections between her deadly brain disorder, sporadic Creutzfeldt-Jakob Disease, and mad cow disease." --- Carol Christian, reporter, Houston Chronicle "Mad cow disease: Could it be here? Man's stubborn crusade attracts experts' notice" August 5, 2001

"I strongly suspect he (Terry Singeltary) is right in thinking the USA has had BSE cases. The American government is making the same mistake as the British in putting the short-term commercial interests of its farmers before health considerations. "It should start formal and widespread testing of cattle plus compulsory autopsies for all human CJD victims at the state's expense. If there is BSE, then leaving it to spread will kill people -- and that would eventually destroy the industry, too." --- Jonathan Leake, science and environment writer Sunday Times, London quoted in Houston Chronicle (above)

"Terry has been helpful in providing contact information regarding suspect CJD cases so that the Health Department can initiate case investigations and learn more about CJD in Texas. I think we learn more from him than he does from us." (noting in the article that the department cannot release records on individual patients). --- Julie Rawlings, epidemiologist Texas Department of Health quoted in Houston Chronicle (above)

"I wouldn't be so zealous in getting the word out if I wasn't convinced that someone is covering up the truth. They used to say BSE would never transmit to humans, and it has. They lied about the feed ban being in place. I've lost faith in the whole process. I've discovered too many things on my own." --- Terry Singeltary, Sr. whose mother died of CJD at age 63

"I've been told by a lay researcher whose mother died of CJD that the unofficial word is that, short of a CJD case showing up in the US that looks *exactly* like the British strain, there will be no acknowledgement of a problem in this country, at least not with the current administration." --- Nicole Aaron whose father died of CJD at age 63

“Food safety advocates argue that the U.S. record of testing 10 percent of all cows -- only those that show visible signs of disease -- looks shabby compared with Japan's requirement that all slaughtered beef cows 21 months or older be tested. Some local governments still test all cows. Japan can afford to claim ‘the customer is king.’ Japan's caloric consumption of meat, which stood at 15.4 percent of the diet in 2004, was a scant 3.7 percent back in 1960. ‘We didn't eat meat before, and we can always go back, said an agriculture ministry official involved in free-trade agreement negotiations.’ ” --- Mayumi Negishi, reporter, The Japan Times “Easing beef ban seen as missing chance to let consumers rule” November 15, 2005

Eight years ago, Terry Singeltary, Baycliff, TX, watched his mother, Barbara Poulter, age age 63, who lived in Crystal Beach, TX, die horribly from a degenerative brain disease. Doctors told him it was Alzheimer's, but Singeltary was suspicious. The diagnosis didn't fit her violent symptoms, and he demanded an autopsy. It showed his mother had died of sporadic Creutzfeldt-Jakob disease.

Strangely, one year before to the day, Terry's next door neighbor's mother, also, died of CJD. So, Terry has been studying this disease for nearly a decade and has become a respected "walking encyclopedia" for researchers, reporters and families with loved ones suffering with or dying from CJD.

Most doctors believe that sCJD is caused by a prion protein deforming by chance into a killer. But Singeltary thinks otherwise. He is one of a number of campaigners in the world who say that some sCJD, like the variant CJD related to BSE, is caused by eating meat from infected animals.

Terry said he became convinced that BSE is here as he watched his mother die. The rare, fatal brain disease is sometimes accompanied by severe jerking.

"She would jerk so bad at times, it would take three of us to hold her down," he said. "They can call it whatever they want, but I know what I saw, and what she went through. `Sporadic' simply means they don't know."

His mother started seeing brown spots in September 1997 and was virtually blind within two weeks. By the eighth week of the illness she was bedridden, and in the 10th week she died. Before that she had been in good health, he said.

Creutzfeldt-Jakob Disease CJD is a horrendous infectious rapidly progressive fatal brain-deteriorating disease for which there is no treatment or cure. One strain, nvCJD, is linked to bovine spongiform encephalopathy (i.e. Mad Cow Disease) in Great Britain.

CJD often escapes detection. A common misdiagnosis is dementia or Alzheimer's Disease.

The personal story you will hear today and others on a website called Many Faces of CJD put a human face on this always fatal disease. Most of the stories tell of people who have died of CJD or currently have CJD. These stories describe the symptoms and progression of the disease as well as the problems in getting it correctly diagnosed

Shirley Wilkes Johnson produced this week's Go Vegan Texas! Shirley has been studying and educating the public on mad cow disease after the outbreak in the UK in the mid-1980s when she heard Howard Lyman, author of Mad Cowboy, talk about the disease at Rice University. She believes her own aunt died of symptoms of CJD, several years ago, even though the family, like most families did not request an autopsy.

Thank you for listening with an open mind and heart this morning to Go Vegan Texas! on Pacifica Radio/ KPFT.

"Like Paul Revere with e-mail, Terry Singeltary Sr. is on a mission to sound an alarm: Beware of mad cow disease. As is true of many crusaders, however, his pleas often fall on deaf ears. But since his mother's death in December 1997, the Galveston County man has been obsessed with possible connections between her deadly brain disorder, sporadic Creutzfeldt-Jakob Disease, and mad cow disease." --- Carol Christian, reporter, Houston Chronicle "Mad cow disease: Could it be here? Man's stubborn crusade attracts experts' notice" August 5, 2001

"I strongly suspect he (Terry Singeltary) is right in thinking the USA has had BSE cases. The American government is making the same mistake as the British in putting the short-term commercial interests of its farmers before health considerations. "It should start formal and widespread testing of cattle plus compulsory autopsies for all human CJD victims at the state's expense. If there is BSE, then leaving it to spread will kill people -- and that would eventually destroy the industry, too." --- Jonathan Leake, science and environment writer Sunday Times, London quoted in Houston Chronicle (above)

"Terry has been helpful in providing contact information regarding suspect CJD cases so that the Health Department can initiate case investigations and learn more about CJD in Texas. I think we learn more from him than he does from us." (noting in the article that the department cannot release records on individual patients). --- Julie Rawlings, epidemiologist Texas Department of Health quoted in Houston Chronicle (above)

"I wouldn't be so zealous in getting the word out if I wasn't convinced that someone is covering up the truth. They used to say BSE would never transmit to humans, and it has. They lied about the feed ban being in place. I've lost faith in the whole process. I've discovered too many things on my own." --- Terry Singeltary, Sr. whose mother died of CJD at age 63

"I've been told by a lay researcher whose mother died of CJD that the unofficial word is that, short of a CJD case showing up in the US that looks *exactly* like the British strain, there will be no acknowledgement of a problem in this country, at least not with the current administration." --- Nicole Aaron whose father died of CJD at age 63

" My family has always been in medicine, so I am not ignorant of how medicine works or the establishment's failings. I have even gone back to school since my father's death to go into medicine myself, and get into prion research. I know what killed my father. The simple fact is that any person who dies in 36 months or less (my dad took about 18 months) and is under age 70 probably doesn't have Alzheimer's. There was a study a couple years ago that tracked CJD patients and how long it took them to die, and the average duration was almost five years. But still, this 6 month or less perception (from Britain) persists among doctors and the public. It's sad." --- Nicole Aaron

This morning on Go Vegan Texas! we put a human face on mad cow disease as we talk to two Texans who each lost a parent, at age 63, to Creutzfeldt-Jakob Disease CJD:

Nicole Aaron of Conroe, whose father lived in Tomball, TX, and died of CJD, in 2002, andTerry S. Singeltary. Sr., of Baycliff, whose mother lived in Crystal Beach, TX. and died of CJD, in 1997. Strangely, one year before to the day, Terry's next door neighbor's mother, also, died of CJD. So, Terry has been studying this disease for the past decade and has become a respected "walking encyclopedia" for researchers, reporters and families with loved ones suffering with or dying from CJD.

Creutzfeldt-Jakob Disease CJD is a horrendous infectious rapidly progressive fatal brain-deteriorating disease for which there is no treatment or cure. One strain, nvCJD, is linked to bovine spongiform encephalopathy (i.e. Mad Cow Disease) in Great Britain.

CJD often escapes detection. A common misdiagnosis is Alzheimer's Disease. The personal stories you will hear today and on a website called Many Faces of CJD put a human face on this always fatal disease. Most of the stories tell of people who have died of CJD or currently have CJD. These stories describe the symptoms and progression of the disease as well as the problems in getting it correctly diagnosed.

Terry said he became convinced that BSE is here as he watched his mother, Barbara Poulter of Crystal Beach, TX, dying of sporadic Creutzfeldt-Jakob Disease. The rare, fatal brain disease is sometimes accompanied by severe jerking.

"She would jerk so bad at times, it would take three of us to hold her down," he said. "They can call it whatever they want, but I know what I saw, and what she went through. `Sporadic' simply means they don't know."

She started seeing brown spots in September 1997 and was virtually blind within two weeks. By the eighth week of the illness Poulter was bedridden, and in the 10th week she died. Before that she had been in good health, he said in a newspaper story.

Nicole empathizes with Terry: " I know firsthand the frustrations associated with getting a diagnosis for these patients. In my father's situation, he had enough of the clinical symptoms to be "probable," confirmatory MRI and brain wave tests, and a neurologist to sign off on it. But his primary care physician disagreed and labeled him dementia. I suspect that part of that had to do with his being a medicare/medicaid patient, but I'll never know for sure. He was 63 years old when he died."

From her experience, Nicole describes the breakdowns as: "one, family care physicians who can't recognize CJD, or don't want to acknowledge it; two, poor patients being pushed aside and three, hospice workers who discourage families from autopsies, and/or don't know that the Prion Surveillance Center will cover the cost of getting the tissue samples."

Shirley Wilkes Johnson produced and will host this week's Go Vegan Texas! Shirley has been studying and educating the public on mad cow disease since it first broke out in the UK in the mid-1980s. She believes her own aunt died of symptoms of CJD, several years ago, even though the family, like most families did not do an autopsy.

Shirley is also a well known vegan cooking instructor and later this month, August 25, she will teach a class on Vegan Indian Cuisine @ Fiesta Culinary School (See announcement and menu below).

And, please remember to support Go Vegan Texas! on August 22 during our station's one week Mini Fund Drive. Without KPFT, there would be no Go Vegan Texas!

I will return to Houston in time for our August 29 show with Dr. Joel Fuhrman, and we will discuss his new book, "Disease Proof Your Child." Dr. Dan Maloney, a vegan pediatrician in the Woodlands, will co host that show.

Thank you for listening with an open mind and heart this morning to Go Vegan Texas! on Pacifica Radio/ KPFT.

The Many Faces of CJD:http://www.fortunecity.com/healthclub/cpr/798/cjd.htm

"Everyone's experience is different so the stories are all different. If you have been personally affected by CJD please consider contributing your story to this website. In the future we also hope to include stories by people who have received medical treatments, such as cadaver-derived growth hormones for short stature, that put them at risk for CJD."

CJD Watch: http://www.fortunecity.com/healthclub/cpr/349/part1cjd.htm

This site will be tracking Creutzfeldt - Jakob Disease (CJD) victims in the geographical areas in which they lived and died. We, both the general public and medical professionals/researchers, need to know how widespread CJD is and where there are clusters. Therefore, we hope to include all CJD cases worldwide. To do this we are asking the general public and the families of the victims to help us in this project. Our ultimate goals are for strict mandatory reporting of CJD victims in all areas and a cure for the disease Please help by sharing information about your family member, friend, or acquaintance who had or has this hideous disease. Thank you so very much.

CJD Voices: CJD Voice.org

Brain Autopsy is vital for diagnosis and documentation of CJD. We can help. We are a grass roots organization of individuals formed in May 1997 to support families during and after a CJD crisis. We also discuss various issues surrounding CJD and other related illnesses. As of October 1999, we have over 400 members.

Prion Surveillance Centerhttp://www.cjdsurveillance.com

Brain Autopsy is vital for diagnosis and documentation of CJD. We can help. We are a grass roots organization of individuals formed in May 1997 to support families during and after a CJD crisis. We also discuss various issues surrounding CJD and other related illnesses.